Sunday, January 22, 2012

Missing my baby...

Yesterday made one week since my little man went to heaven. And yesterday was the hardest day so far. A whole week? What have I been doing for a whole week? How in the world have I made it a whole week without kissing those sweet lips or holding those sweet fingers? I miss him more than I know how to say. I miss his face, I miss his smell, I miss everything about him and our life together. I've been trying to do normal things... I've gone to Target, I've gone to get ice cream, and I've gone to dinner with my family for my grandma's birthday. But it's hard to just "go on" and try to be normal. I feel guilty for everything I do. Nothing feels real or right. I would literally give anything in the world to have my baby back... I don't want a "normal" life. I want my life with Tripp back. I would take care of him every day, all day, for 100 years if could. My body is numb... my emotions are numb... and each day has been like a blur. And now that I don't have him here, I realize HOW MUCH my life actually revolved around him. I know that I didn't take a single minute for granted... but what I wouldn't give to have just one more day with my baby. There's just something about knowing that you can't have something, that makes you physically yearn for it. I miss him so much. I could have NEVER prepared for this... no matter how long I was given.

Nothing of Tripp's has been moved yet... not even an inch. His toys are the same, his bed is the same, the rocking chair is the same and his medicines are in the same spot. Nothing has been touched. I don't know how long it will take me... and maybe that is why I haven't been able to grieve properly (not that there is a "right" way to grieve), but maybe it's why I feel like it hasn't hit me yet... like it's not real. Like this is some kind of terrible nightmare.All I can think about and see in my head is his precious, beautiful face the last time he was in my arms.

Tripp's service was beautiful. There was an outpouring of love and support from SO many people. Most of the people that I hugged began their conversation with "You don't know me, but..." That is a true testament of the lives that Tripp has touched. For so many people that we don't even know... people who have never even met Tripp, to come out and show their support is so incredible. Thank you to those who were able to come out and support us, and thank you also to those who could not make it and showed your support from home by your prayers, lighting candles, and offering moments of silence. I could truly feel the love on Wednesday. There were people who stood on the side of the road, holding signs with words of love and support for us to see on the way to the cemetery. And businesses all over town hung red balloons in honor of Tripp. It was truly amazing to see.

I have gotten some requests from people to post my speech from the service, so here it is...

I would honestly like to tell you all that I’ve never had to think about what I was going to say at my son’s funeral, but the TRUTH is that this exact moment has played over and over in my head for the past few months. What a nightmare... having to say goodbye to your only son. I don’t know which is worse- losing a child unexpectedly, or having years to plan your goodbye, knowing that it is coming whether you are ready or not. I’ve pictured this very moment in my head... me standing here, and all of you guys gathered here for my son. But even though I’ve pictured it again and again, deep down I had hoped with my whole heart that it would never really happen. But here I am.You might think that I feel just a little bit of relief, after watching my baby suffer- day in and day out- but I don’t. I’m not relieved at all. I want him in my arms. I want to hold his sweet little fingers. I want to sing to him. I want him to smile that amazing, “melt your heart” smile. I want to spend every minute of my day taking care of him- because that’s all I know. I don’t know how to do anything else. I don’t want to do anything else. I know I will heal with time, though this hole in my heart will never, ever be filled. Every single moment for the rest of my life, will be bittersweet, because I won’t have my baby to share it with. It still doesn’t seem real. I have spent the past 2 years and 8 months living like a Tiger mom, never letting the doctors or nurses really even touch Tripp, and making all the decisions myself. And this Saturday, for the first time, I had to hand over my baby, knowing that I would never see his little face again. Having to TRUST that someone else was going to take care of him the way that I have taken care of him. But I suppose if you have to entrust your child’s life to someone else, who better than God himself, right? Over the past few weeks, we have all prayed for peace. I have prayed that God’s will be done, whatever it may be. And I can tell you that our prayers were answered. Tripp’s passing couldn’t have been more peaceful. He was in his favorite spot, in the rocking chair, in my arms, with my mother at his head. God took care of him. And he took care of us. And as far as God’s will, I think we can all look around and see what that was. Tripp has brought all of these people together in one spot, in prayer. No matter what faith you are, and no matter what you believe... right now we are gathered as a family, as Tripp’s family, and as God’s family. And we are putting aside our differences, trusting and believing that Tripp is sitting on Jesus‘ lap at this very moment, happy and healthy, looking Jesus in the face, and saying, “Look, Jesus, at what I’ve done? Aren’t you so proud of me?” I bet Jesus is proud. I know that as Tripp’s Mommy, I could never, ever feel more proud. I know that my life will never be the same because of Tripp. He is the most precious gift I’ve ever received. I hope that he will continue to change the lives of so many people even though he is now in a far better place. I hope now he will be watching over and taking care of me, because I now need all of the comfort and care I get. Thank you all for coming today. And thank you for the support that you have shown Tripp, myself, and our family. I know Tripp is smiling down on everyone here today, knowing his job here on Earth was done. And done well. May God bless you all. Thank you.

It would be impossible for me to personally thank everyone who was a part of the services on Wednesday, so I want to extend a very special THANK YOU to everyone who pitched in to help us. Everyone who brought food (which was wonderful), the beautiful flowers everyone sent, the people who volunteered their time to set-up or help clean up, and everyone else who did ANYTHING to make Wednesday (and this whole week) just a little bit easier for our family. Once again, I have THE MOST AMAZING support system, ever.

A huge thank you to all of the people who came from out of town, especially Patrice (Jonah's mom), Tim (Bella's dad), Sam, Chloe, and Marybeth Sheridan (Sam was one of the first of the EB kids to go through the Bone Marrow transplant), and also I got to meet the amazing family who are adopting Anton. I was so surprised and happy to see them there. It was SO awesome to get to finally meet so many people who you feel are already like family. I've talked to Patrice so much over the phone and through text that when I finally met her, I really felt like I knew her my entire life. She is everything I expected her to be and more. An amazing and inspiring woman. I was so glad she got to come to the house afterwards and spend some time with us. I can't wait to spend some time with her under different circumstances... not such sad ones.

Meeting Sam Sheridan was an experience that I will never forget. I wanted her to know HOW MUCH her being there meant to me. Sam is 16 years old and has Dystrophic EB. She is so beautiful. And she is so brave. Sam, her mom Marybeth, and her sister Chloe drove down from Tennessee to come to Tripp's service. I know it must have been hard on Sam. What an AMAZING young woman she is. Thank you, Sam, for letting me hug you... and thank you for being so brave. I promise you that I will fight for you, for Tripp, and for every other person with EB for the rest of my life. None of your suffering or Tripp's suffering will be in vain.

When the day of the service was over, and everyone had left our house... our family was gathered around the table, just talking about the day when my sister found this video on her Facebook page. Now, I don't know if you guys know how many times I have searched "Elmo songs" on YouTube, but I can assure you it was hundreds of times- and I had never before found this one. It's called "Little Butterfly Friend." Think it sounds perfect for Tripp? Just watch it... it's the sweetest, most perfect song ever... 1. because Elmo sings it.. and 2. because it's about one little butterfly who Elmo calls his "friend" and holds in his hand. Think this song came at the right time? The day of his funeral... Think it was my sign that I had never heard it until THAT very day? I'll take it. It's given me comfort through this past week.Thank you, Elmo. I know it wasn't written for Tripp, but it couldn't be more perfect.

396 comments:

There is no right way to grieve and there's certainly no hurry in getting into a state of 'normal', whatever that is. You are so strong and so generous to have shared Tripp with us, the people who haven't met him. I thank you so much for that, for your story and for making me aware of EB. Bless you, and you're in my prayers.

Aching for and with you. Can't wait to hug your neck again. I can just imagine his sweet face in heaven smiling down at his beautiful, brave mommy. And you're right, what a huge celebration must be going on and how the angels are singing. Can't wait for the day we join our boys!!!

Thank you for your wonderful, beautiful update. I, along with thousands of others, have been thinking of you and praying so hard for you this week. What you said at the service was beautiful. I too found the Elmo video you posted on your blog. What is strange is that for months I have searched for Elmo videos on Youtube every day for my 11 month old. Every day it the exact same videos have come up in the exact same order. Then, just a few days after Tripp passed away, Little Butterfly Friend popped up as the first one in line. I think it WAS written for Tripp! It is a sure sign that his spirit is flying high! Now we watch that video first each morning and smile with tears as we remember Tripp and think of you. Thanks again for sharing your words. Thinking of you from St. Louis, MO.

this is so beautiful. what an amazing, important life your little man had. he was SO loved. and that is all anyone can really hope for in this world. you are both incredible human beings and tripp has touched my life forever. thank you for sharing his life journey. he truly was a little angel on earth. and now he is where he can be at peace.

Courtney, you are the most courageous person I know. You are so strong. I bet Tripp is in heaven looking down on you. I have never met you, but just by reading your blog, you can tell that you were the best mommy to little Tripp. I had so wanted to go to Tripps service, but I had to work. I though of you and your family on my 12 hour shift. Today, I went back and read EVERY SINGLE post on your blog. I KNOW that you already know this, but you had a BEAUTIFUL son. Those chubby little cheeks and beautiful brown eyes... I could just kiss him all up!! Just remember, you wi get to see your son again one day, and he will be as beautiful as the last time you saw him!!

Wow. Wow. Wow. You continue to amaze me. Wow. I never met Tripp. I miss Tripp terribly. I can't imagine the hole in your heart right now. The butterfly song has tears running down my face. What a perfect, perfect song for you. What comfort it must bring you and how symbolic it is so he butterfly Tripp flying around with his best friend, so effortlessly and so peacefully. Absolutely a sign from God that Tripp is enjoying his new wings. Continued prayers for you and your entire family.

Courtney, I too lost a son & though it has been almost 5 years for me, I well remember those first weeks where I just wandered & felt like there was always something else I should be doing. There is nothing that can prepare you for losing a child! Leave Tripp's things exactly where they are for as long as you want them to stay. (You will know when the right time is to change that.) Trust your heart when it comes to grieving. Please be gentle with yourself & remember that God is close to the brokenhearted. You will be in my prayers.

praying for comfort for you and your family. you are right, you can never prepare yourself for losing a child. i lost my son unexpectedly in 2010. there definitely is no "good" way to lose a child either. it is all just terrible, and i'm so sorry that you are now feeling this pain. i wish that Tripp was still here in your arms. and i'm sure you already know this, but your son is truly amazing. he has touched my life as well.

Courtney, Im so sorry for your loss, however, like you said, he is at peace and no longer in pain. I cant even imagine what you are going through! You're an amazing mother and person, I will never forget you or Tripp. Take each day as they come, dont be afraid to let the dark, sad days happen and cry when you need too. This will make you stronger than you already were-if possible. Tripp has an amazing mommy to watch over! With love from BC, Canada, Hope!

Courtney, I have never met you, but think about you often. You remain in my prayers. You are an amazing woman and your strength and faith are inspiring. I can not even imagine the pain you are feeling right now. It is amazing how many people have been touched by your little angel and your faith. May God bless you during this time. Your speech was absolutely beautiful to read,and perfect.

Courtney, I wish I could reach through this screen to give you the biggest hug ever. You are an amazing mother and Tripp couldn't have had a better team mate if he tried! Hang in there, I wish I could take away your pain. xoxo

I've been reading your blog from the beginning and my heart aches for you. Tripp was such an amazing little boy and he had the most beautiful smile. Always know that Tripp is in Heaven looking down on you and smiling. You are such a wonderful mother and such an inspiration. Tripp loved you so much. I pray that God gives you and your family peace. Tripp's story has forever changed my life -- a change for the better. I will always remember Tripp.

Continually lifting you up in prayer. Oh Lord let your love and peace flow into Coutney's life. Please wrap your arms around her and pull her close to you, allow her feel connected to her baby boy through you, Jesus. Highest praises to you oh lord for you knitted Tripp together in his mothers womb and knew him before the foundations of the earth were laid.amenEvery Elmo I see prompts me to pray for you.Love from TX.

My heart aches for you, Courtney. I have a 5 year old son whose death I know is coming & what you wrote confirms what I have feared ~ that no amount of time is enough to prepare for losing your child. I have thought about how difficult it will be to go on when my life has been all about taking care of him for all of his.

Sorry; I'm not trying to make this about me. I told you that just because I guess I want you to know your words are not falling of deaf ears... there are people, like me, who understand what you're saying.

I am so, so sad that Tripp is not here for you to hold & kiss. I'm so sorry your heart is hurting so terribly. I wish there were some words that would help ease that pain.

This breaks my heart so so much. Your speech was amazing a so heartfelt. My eyes are filled with tears. The butterfly song is ABSOLUTELY PERFECT and I believe 1000000% that it was a sign from above and from Tripp <3 Ladybugs are what I relate with my daughter who passed away and believe me I've never seen so many since she's been gone. You have a very strong faith, but honestly with a baby in Heaven you feel that much closer to the other side. Do not rush yourself to move his things...there is no rush and it will not push you through the stages of grief any faster. Move at your own pace. I left my daughter's nursery exactly the same for 1.5 years and when I did make changes it was because her baby sister was on the way. I know it's not the same to lose a baby the way I did and the way you did, but there is a community of women out here dealing with the loss of a baby/child and we're here for you.

Courtney, I am so glad you shared with us your thoughts and feeling over the past week. I have been thinking about you so much, hoping you are holding on, hoping you are finding things to make you smile and praying for God's mercy to give you the strength to face every new day. Please know Tripp is forever in my heart ~ God has big plans for you, I am sure. I hope you can still use this blog to enlighten us further on EB and to help you ease your heartache. You are so loved! I think you are an amazing mommy! Much love to you, Diana

Dearest Courtney, I have spent most of my week in prayer for you and your family. I have spent the last several days reading each and every blog, watching every video and viewing every picture. Your story is amazing. I can feel the love. Many prayers for your mom too. What a legacy and testimony to share. Thank you for that. Your story has strengthened my beliefs and has added much to my personal relationship with God. God has blessed you in many ways and will continue to. Let Him carry you for awhile. Peace and love.

I am so sorry for your loss Courtney. I cannot imagine losing my son, who is about a month older than Tripp is.

I lost my Grandma 13 days after my son turned one. It was one of the hardest things I went through. I didn't want any thing of hers to be moved yet, but people were eager to move them, so it made it even harder to let go. Don't move his things until you are ready.

You are so strong! Tripp is certainly sitting on Jesus' lap watching you. He is thanking him for having you as his mom. I know it is hard not having him, but in time, the pain will become less, as hard as that may be to believe. Your story has touch so many lives, certainly mine. You have such strength, and I can only hope to be half as strong as you are. Thank you for sharing with everyone your stroy, and your previous poems have just melted my heart. I wish you the best and will continue to keep you and your family in my prayers.

Courtney, you are absolutely amazing, and you have no reason at all to feel not one ounce of guilt! You have been by Tripps side every possible minute and have done everything you possibly can, please please do not feel guilt. I don't think any of your readers would convict you of that! I am so sure you are lost at the moment, but believe, and you will get through it. God has brought you to this, he will get your through this. And what an awesome Elmo video. Tripp is that butterfly. Rest and have fun little Tripp. You have blessed us all!

Tripp's Mommy,I know you have a name but you will always be Tripp's mommy. I have prayed for Tripp and for your family and I know that while he is healed and flying in heaven you and your family are hurting. I will continue to pray for you. You are a blessing and Tripp was a miracle.Love from Texas....

Courtney, these are beautiful words. And Tripp is continuing to change lives even though he is not here. I have been sharing his story with my students, and they have been truly touched by his strength and braveness.

Courtney - my heart aches for you. But I need to thank you for sharing your beautiful baby with all of us. You have reminded me to take joy in the simple things, enjoy the quiet times with family, and just love unconditionally. You have an enormous group of supporters who are cheering you for this next step in your life.

Courtney, what an achingly beautiful tribute to your son. You have been gifted with a way to put suffering into words, so that your readers think and feel and understand things that we otherwise could not. Thank you for sharing yourself in this way.

I can't even tell you how many times I've thought of you this week. May you continue to feel the love and prayers of so many people lifting you up as you follow the road God has laid out for you and use His strength to walk each day into the unknown.

My heart breaks for you Courtney. Still praying & continuing to pray for you! Thanks so much for posting, have been watching for one. Thanks for sharing your little boy with us. Continuing prayers and love for you and your family. Casi

I was just going back and reading all of the old posts...I think that the "happy feet" video is my favorite. I have grown to love every single little boo boo that Tripp had. It's like they all needed to be kissed by you, his special mommie. You are an inspiration to so many people and have forever changed my life as a mother and a Christian. I pray for you daily and wish there was more I could do to help you heal. But, the truth is that there is no hurry to put the sorrow aside. The pain of losing a child is unimaginable. Take all the time in the world and don't ever let anyone tell you differently. Thank you for opening the world's eyes to EB. God picked you for a reason and you proved Him right. Thank you for the post...there are many, many people who were wondering how you were. God bless you and your family. May you one day have the same peace that Tripp now has.

Oh Courtney we all miss Tripp right along with you. I know I do. I miss checking your blog and facebook for an update on Tripp. I miss thinking of him in prayer and allowing him to encourage me to stop complaining. Tripp may be physcially gone but his lagacy is far reaching. Thank you for posting please keep us updated on how you are. We love you.

I hate to say that I know your pain. 2 years ago today my son grew his Mwings and flew to Heaven. I admire your strength and Tripp's strength. What an amazing child. You leave his stuff where it is until you are ready. Tyler has a closet with his stuff in it. I know your feeling of guilt too, but just remember that he is in Heaven! He is so proud that his mommy is going to be ok. It will take time, but you will find your new "normal". Marisa

You don't realize how strong you are, just being able to share your thoughts and feelings with the world only one week after Tripp entering into heaven is true courage and strength. it sounds as if you have taken your first step in the healing process just from this post. You have taken care of Tripp every second since his birth, now he is taking care of you! I will continue to pray for your strength and healing daily just as I did for your beautiful baby boy Tripp.

I came across your blog after Tripp went to heaven, but have spent more hours than I care to admit catching up on his amazing life. Courtney, you must be the strongest, bravest person out there, Tripp is SO blessed to have you as his Mommy. You spent everyday taking care of him, I KNOW that he is so excited that he can be the one to take care of you now from heaven. You and your beautiful son are truly an inspiration, I have laughed and cried and prayed for you while reading your story. Stay strong, and know that Tripp is always going to be with you.

I am so sorry for your loss. What an amazing person you are. I just started reading your blog on the day that he passed away. Be strong and continue to fight! Tripp came here to teach the world through you, and he will continue to do so with your words.

Courtney, I am amazed at your way with words, you are amazing, and you are loved. Still praying for you and your pain, may God comfort you in your time of need.

I loved the Elmo butterfly song, it started appearing right after Tripp's passing, and if you notice, Sesame Street didn't upload the song to youtube until a day or so before Tripp's passing (when we knew Tripp would only be with us for a short time longer), coincidence, I think not, it just goes to show you how much Tripp and you were and are SO loved! Hugs, sweet friend.

Courtney, I wish I had some words of wisdom to give you, but all I want to do is wrap my arms around you and hug you (sorry if that sounds odd coming from a stranger, but it's true). I think of you everyday and pray for you everyday. I can't imagine the pain and suffering you're going through and I'm so thankful for the faith you have in God and for all the support and love you're receiving from your family and friends. You are such an inspiration with your faith, your wisdom, your honesty and your courage and, as proud as you are of Tripp, I'm sure he's just as proud of you for being such an amazing Mommy. Thank you for making me a better Mommy as well and for teaching me to see things and appreciate my time in a way that I used to take for granted. I hope you plan to continue your blog, I will definitely still be reading!

I was just praying for you, Courtney, and then I came to my computer and read this. I will continue to pray for you, as I know so many others will. Thank you for sharing your heart at such a difficult time. I send love and hugs.

Courtney, Thank you for sharing Tripp with the world! He has personally touched and changed my family's life forever! I hug my kids extra tight every chance I get! We will continue to pray daily that God may grant you the peace and comfort that you and your family deserve! You are an amazing person! You will never stop missing that sweet boy but God will send you joy! Sarah Scalise

You sound like myself Courtney... I want to share a poem and it explains everything of how we as parents feel. I myself had a very fragile sick child. She too died in my arms a month ago. No one knows the feeling of loosing a child unless it has happened to them. Words are unexplainable. I know you don't know me. But, I have yet to meet someone who has lost a child. Everyday for me is hard. I live in New Orleans, and I know you get a lot of messages. But, if by some chance you get this please email me one day and maybe we can share some of our pain together. I will continue to pray for you and your family. I will ask my Sweet Gracie to watch over your precious baby boy! My email is amylou187@yahoo.com

A Mother's GriefA Poem by Kelly Cummings

You ask me how I'm feeling,but do you really want to know?The moment I try telling you,You say you have to go.

How can I tell you,what it's been like for me?I am haunted, I am brokenBy things that you don't see

You ask me how I'm holding up,but do you really care?The moment I start to speak my heart,You start squirming in your chair.

But because I am so lonely,you see, friends no longer come around,I will take the words I want to sayAnd quietly choke them down.

Everyone avoids me now,I guess they don't know what to say,They told me "I'll be there for you,"but then turned and walked away.

Call me if you need me,(that's what everybody said),But how can I call you and screaminto the phone,My God, my child is dead?

No one will let mesay the words I need to say-Why does a mothers griefscare everyone away?

I am tired of pretending,my heart hammers in my chest,I say things to make you comfortable,but my soul finds no rest.

How can I tell you thingsthat are too sad to be told,of the helplessness of holding a childwho in your arms grows cold?

Maybe you can tell me,How should one behave,who's had to follow their childs casket-watched it perched above a grave?

You cannot imaginewhat it was like for me that day-to place a final kiss upon that box,and have to turn and walk away.

If you really love me,and I believe you do,if you really want to help me,here is what I need from you.

Sit down beside me,reach out and take my hand,Say "My friend, I've come to listen,I want to understand."

Just hold my hand and listenthat's all you need to do,And if by chance I shed a tear,it's alright if you do to.

I swear that I'll remembertill the day I'm very old,the friend who sat and held my handand let me bare my soul.

You have been on my mind so very much. So many prayers & thoughts. Wednesday I sat watching my children get there rewards at school. I was thinking of Tripp & you. It was the day of his service. A mother walked in with a Elmo balloon. I melted & cried I thought of your precious son. Courtney I love you so much & <3 Tripp <3 there will be a day a wonderful day when you will be together forever. I'm mailing you something very special. {{{{{HUGS}}}}}

Don't be hard on yourself about not moving his things. That'll be something that'll be hard no matter when you do it. I mean, none of my kids have passed away & I can't even bring myself to get rid of any of their baby clothes because it's saying goodbye to my baby. Take care. Take time.

Courtney I am sitting here sobbing.I can almost not breathe just reading about your loss. I keep thinking...If I feel like this then how must she feel?? I can only tell you that I have prayed for you every day and will continue to do so.....I will never , ever forget you or Tripp.One of my son's is only two months older then Tripp and I promise you that I hold him and my other children closer....I think of all you have gone through and your incredible faith and I realize the need to be thankful for all that I have....to treasure each day. Tripp is amazing.....so is his mommy.<3

I want SO BADLY to make this better for you. Of course you miss sweet Tripp - I cannot imagine the hole in your heart. I just want to tell you that just because Tripp is with Jesus does not mean we're going to stop praying for you. I say that on behalf of my family, but also on behalf of everyone who's been praying for you and Tripp. We all love you so much (even though we haven't met you) and are lifting you up in prayer right now.

God has given you amazing strength, and He will carry you and give you strength now. If there's ANYTHING you can think of that we can do to help, please email me.

I heard the service was so special. I wish I could have been there. I wish I had some magic words that would help take some of the pain away. That "day after" is so so hard and the shock/numb/guilt combination is surreal, I know. And, I know that knowing that doesn't make it any easier. You will start to heal you wounds over time. You have a whole community of supporters lifting you up. Lean on us when you need to.

Courtney you and your family are such an inspiration to everyone and my heart just melts when I think about your precious angel Tripp. I have a 10 month old little boy that I hug a little tighter and hold a little longer just because of you:) I will pray that the Lord will comfort you and I am sure your little angel is so proud of his mommy too! I never heard of EB before I heard about Tripp. Now I will never forget and I will always support this cause just because of your sweet angel!

Courtney,Your speech from the service is so beautiful. What a great tribute to your little man. Your faithfulness to God never ceases to amaze me. I know Tripp is up in Heaven laughing, running, and playing, and will be the first one to greet you some day. I can't even begin to imagine what you are feeling, I just want you to know how much you and Tripp mean to me, and how much closer to God you guys have brought not only me, but my friends and family as well. I don't know how I can miss someone I have never met so much, but I just fell in love with Tripp through your posts. Thank you for sharing him with all of us, I can't wait to meet him someday. We love you! (And your sweet mama). Prayers daily for you guys...

Courtney, thank you for sharing your angel Tripp with the world. You and Tripp have changed my family forever, there will never be a moment taken for granted. I will continue to pray that God may send you the peace and joy that you deserve. You will never stop missing that beautiful baby, but God will get you thru this!

You are simply amazing Courtney. Tripp will never be forgotten because of your willingness to share your very personal story with all of us. Thank you for bringing EB to the forefront of so many minds. I'm sure a lot of others share the same gratitude. I will continue to pray for the Lord's comfort for you and your family.

Courtney, I just want to send you BIG HUGS! You are so strong. I've been reading your blog for a whole year now and I just never knew what to type.... But I want you to know that your story has change me forever, for Good. I have two kids and I appreciate every single little thing they do, I thank God for their health all the time. I don't care if they have blue eyes or whatever "cute color" people always want to see babies with, I thank God that they have eyes, that they are healthy... And when they get sick, I don't get frustrated anymore, it could be so much worse. Thank you so much for sharing your life with all of us. Tripp is so special, his wings have to be huge. What a precious Angel. God bless you Courtney.

Thank you for updating all of us--most of whom you don't know. Many of us are weeping with you and praying for you from afar. May God be near you in this time of your heart being utterly broken, and may He provide you with comfort that none of us can understand. Tripp was blessed to have you as a mother and was blessed to have experienced 2 years and 8 months surrounded by your love. He is in heaven and in no more pain and is experiencing complete joy--I pray you meet him there one day and that this separation is just for a little while. I will continue to pray for you and your family.

I thank you for being such as inspiration to all of us EB moms, you continue to be in my thoughts and prayers. I Even said an extra prayer this evening at church, i wish i could have been there this past Wednesday. I was definately there in spirit. Thank you for sharing Tripp's life with all of us.

I cry every single time I read your blog. The love you have for Tripp just warms my heart. I took a night when I first found your blog (not long ago) and read every single one of your posts. You are an amazing mom and I know God was smiling down on you during the service as you spoke those kind and true words. Yours and Tripp's story has made me aware of EB and I now read other EB Blogs to follow their journey and to pray for them. I can't say that I know what you're feeling because I do not, but I do know that Tripp will always be with you and will look over you during this hard time. You, Tripp, and your family are so loved and have touched so many more people than you can imagine.

My heart is broken for you. I can truly only imagine the pain. I am glad he is in peace, but I am so sad that it means you don't get to hold him in your arms right now. I know he will watch over you and that you will see him again after this life and you can be with him forever. BUT that doesn't make it easier right now, I wish there was something I could do to ease your pain, because I think that is a pain that no mother should ever have to feel!

Thank you so much for sharing your story, your life, your little man. I found your blog after Tripp had passed, and I've since fallen in love with him. I think about him, and you, all the time. I can't imagine how you're coping. I pray for you to soon have, after you have mourned, 'The Peace that paseth all understanding.' I am mourning with you. I am praying for you. I am a better mother from coming here to your blog, and meeting sweet little Tripp.

We are still praying for you Courtney. Our sermon today at church was about God's power and I immediately thought of you and how God has used you, Tripp, Facebook and your blog to spread his Good Word!

As a mom of 3 boys this post and what you have gone through the past week absolutely breaks my heart. Tripp really had the most beautiful smile and his spirit transcended the sores on his sweet little body that he just looked like an angel from the beginning. My youngest boy is 4 and my husband and I always say that he has an "old soul", I think Tripp had to have been an "old soul" as well to live the life he did. I have thought about you and your family all week long. It took me 3 days before I got the courage to tell my boys what happened to Tripp. I agree with what Mackenzie said about not rushing to move Tripp's things. When my mom died (I know it is different) it took my dad a long time before he could go through her stuff. And sometimes he would only make it through a box before it was too much. It will happen, you will get through his stuff. I wish I were closer so that I could know you. I'm friends with Jennifer (Daylon's mom) and she told me how wonderful you are. Anyway, I'm rambling, but while I don't understand exactly what you are going through, I think about you all the time and pray for peace for your family still. I loved your boy and I didn't even get to actually know him! And I love your family because it is awesome to see that there are families out there in this world that are like yours. :) Maybe one day I will actually get a chance to meet you. :) Love,Memory

Tripp's service was the most beautiful thing I've ever seen. I wish I could have kept it together better when I met you, in order to tell you how inspiring you are. I'll never forget the how beautifully you spoke from your heart like you always do here. My students, my family, and I are still praying hard for you and your angel. We sent him Elmo balloons on Thursday. Thank you again for inviting us all into your world of dedication and love. We've learned so very much. And thank you for inviting all of us whom love Tripp, to pray with you on Wednesday. We'll continue to pray and to hope and to spread EB awareness.

As with the many others...you don't know me, but as I sit here with tears streaming down my face...Courtney you are such an inspiring woman of God. I don't know that I would have your strength. I have a 15month old son and I have read and re-read your story the last week and every time I end up in tears. His pictures, his videos, his drumming...the grief I feel for you and your son is insignificant compared to yours. Not a day has gone by this past week where I haven't thought of you, prayed for you and your family, and begged God to comfort you. As a mommy, I can't even begin to imagine how the last several years of your life have been. I will continue to pray for God to comfort and guide you. You truly had an amazing son. My heart breaks for you. Rest in peace baby Tripp.

Courtney, your willingness to share your pain and journey with so many people is so humbling and inspiring. God truly has great plans for you. Continuing to pray for you every day. Thank you for opening your heart. Thank you for allowing the Holy Spirit to use you and Tripp to deepen my faith and cause me to yearn to read God's Word and pray to Him like never before. You are a true disciple of Christ, and I pray that He will give you peace, comfort, and continued strength each day.

prayers continuing for you, courtney, and your family to continue to heal and to feel the support and love from all those around you.....as well as from tripp watching over you all!! i know, GOD is so proud of you and tripp for all the amazing work you've done in HIS name :)

I have recently started reading your blogs and I just want to say that you are truly an amazing and strong woman. You and your little man are my heroes. He is so amazing and so strong and he is an angel. He amazed me by playing his drums! He was so precious and I bet God is so proud of you for taking such good care of Tripp(: You and your family are in my prayers!

Courtney you are such an inspiration! I know Tripp has some big wings and he is watching over you! The butterfly video is priceless. I believe seeing a butterfly is like seeing an angel! I lost my Nana recently and whenever I'm outside playing with my one year old, who absolutely loves elmo, we see this yellow butterfly! Its almost its like she is outside watching over us! I know you will find a cure for EB and Tripp will be there with you every step of the way! Thank for for sharing Tripps story and love! He has taught me so much about loving and you have taught me how to be a great mom! Because of you and Tripp I hug my little man a little tighter and I won't take a single second for granted! I pray for your strength and healing!Amy from Metairie, La

We have never met, but your words have been inspiring to me. Here in Charlotte there is a fabulous group that helps people with the loss of a child... www.kindermourn.org . I just thought they might be a good resource for you and your family. They might be able to help you find resources in your community. I will keep you and your family in my prayers. Thank you for sharing your life....you have a gift with words.

I found your blog from a news site reporting the news that Tripp had passed. In the last week I have been reading back over your two years and 8 months with your son. I know you feel guilty, and I know you miss your son but I truly hope you know just how amazing you are. I know you don't feel like it and that all you were doing was caring for your son but you have given me great perspective in my life and definitely helped me appreciate the health of my two year old that much more. Thank you for your posts, for what you did for Tripp and what you do for all of us. I truly pray that you will be able to find a normal somehow, always paying tribute to the most amazing little boy in the world.

You are an amazing Mommy... I wish that I could of been there for the services... You were in my thoughts/prayers (more that day than normal) and you have EVERY right to grive at your OWN speed... Don't EVER let anyone tell you any differently. There are steps to the process, but no timeline... Be strong and ask for help! Thinking peaceful thoughts and sending prayers your way.

Courtney you are SO AMAZING! I have been following you and Tripp for a while now and must say that I pray I can be half the mother you have been to Tripp I have an 8 month old daughter and could never imagion having the strength to do what you have done! They say God will not bring you to it unless He knows you can go through it and I find this statement to be very true! I wish I could reach through this computer and give you a BIG HUG so here it is ~SQUEEZE HUG~ You are a role model to me and you and Tripp have touched my life in ways you will never know! Thankyou!

Tears are streaming down my face. I wish I could take away your pain. Your Faith is inspiring. Tripp is in God's arms-probably jamming out to Elmo and thanking God for giving him such an amazing Mommy.

Thanks for continuing to post. I know it really helped me. That much CAN continue on. There is no normal, so just follow your gut right now and let God guide you and hold you. There is nowhere and nothing to get to. Right now, it is time to breathe, to be, to miss Tripp, to "do" nothing. We are all here holding you in love and prayer as you begin your grief journey. We. are. with. you. Love, Tim and Ang

Courtney I came upon your story through my cousins post and afterwards noticed that we have mutual friends most from Trinity Baptist church in Pumpkin Center. Tripps and your story is a great story of the love of a family! And I know that when time passes God has freat plans for you! I pray for comfort for you and your family during this time. God Bless you!

You are such an amazing mother! What a beautiful message for your precious precious little son! I am in awe of your strength and your grace. I pray that God gives you comfort and peace at this time. Sending thoughts, prayers and love!

Courtney, You have experienced a loss that no one could ever understand. Don't worry about having a "normal life." You DID have a normal life, caring for your sick child. You are the strongest woman I know to have survived this journey you and Tripp were sent on. This strength will get you through the rest of your life. Just knowing that you did EVERYTHING you possibly could to give Tripp as normal of a life as you could have will get you through. God blessed you with Tripp, and even though his life was short, he will never question how much you love him. May God give you the understanding you need to heal.

My heart is broken for you!! I can hardly see my computer screen my eyes are sooo full of tears : ( I would give anything for you to have that sweet boy back! His beautiful smile makes my heart melt and is really special to me (even though we have never met). Your little guy will live on in each of us--he has made so many of us better people by him just being Tripp : ) I cannot even imagine the road you will have to travel without Tripp (when I do imagine it...I get more and more nauseated for you). You are in my thoughts--Tripp was PERFECT and you should be so proud!! Some of us live to be 100 and don't live as full of a life as Tripp did...he is something special--a TRUE GIFT FROM GOD!! Kelly CunninghamSacramento, CA

Dear Courtney, I have not stopped thinking of you or Tripp even for a second. I have so much that I want to say but I have no right words. I keep watching Tripp's videos and his photos. Little angel Tripp has left an emptiness... I am praying for you. You are an amazing woman Courtney. I admire your strength. Praying hard. Thank you for sharing Tripp with me. A big hug to you.

Wow- tears are just pouring from my eyes as it covers my smile! Courtney, what me and the rest of this world love about you the most is that you are 100% human with a great big heart. Your feelings of "guilt, being numb, all things in a blur" are so normal. I wouldn't exprect anything else from you. As all these other beautiful women stated (especially the ones that have lost their angels), let time be your friend. I hope you don't feel rushed into changing anything. No one faults you for keeping Tripp "alive" any way possible. Love you dearly. I am glad you went celebrate your Grandma's birthday, as I know that was probably hard to do. I wish I could've gone, but I was at work all day and evening. Many prayers are still being sent your way. I hope Aunt Anita is doing well, too.

Courtney, I think about you and Tripp every single day so many times a day! I've cried so many tears! I have tried to imagine that you're okay and that Tripp is getting so much attention And I try not to think about how hard it is to go from being with your little angel 24/7 to not having h there and it breaks my heart!!! I know it's not possible but I have been checking your blog looking for signs of peace for you since losing tripp! And seeing your post and the reality of how hard it truly is and how you just want him back just makes me pour tears. You don't know me either but I love you and I would love to take some of the pain for you!! I wish I could more than anything! I pray for you daily and so many times a day! You are so strong! I sing shoo fly to my baby girl everyday! I will continue to lift you up! Love Briana!

Courtney,I think of you and Tripp often & keep y'all in mind each night when I say my prayers before bed. You are strong enough to find peace because Tripp is still with you each day, hugging you tight! :) I love the Butterfly Friend song, too! Perfect timing, I'd agree! Much love always!! -Brielle & family

My heart breaks for you. Your strength, compassion and faith is incredible. Thank you for sharing your precious Tripp with all of us. He was by far the strongest little boy who touched and changed the lives of thousands. I think about you every day and pray you have some healing although, nothing will take all the pain away. May God bless you always.

Courtney, I am so sorry you are hurting so badly! There is no such thing as "normal" and God never intended you or Tripp or any of us to want to be anything other than extraordinary! Your grief can look however you want it to and can take as long as you need it to. There will never be a day that some people expect...the day when "you are over it." I am 5 yrs out (just 2wks ago) from losing my son...it's true what you said that time will bring healing, but it's also true that you will never forget and never fill that hole. And that's okay. That's a blessing to me, actually, because Noah (my guy) taught me more in his short life than I could have imagined, opened my eyes to so much, and taught me how to love freely, deeply and with all of me, just as it seems Tripp taught you.

One day you will smile again and your heart will match the way your lips feel. It's okay if that day isn't today...and it's okay when it does happen. There is no guilt in it. Tripp lived life to the fullest and he lived it so beautifully. He'd expect the same from you...when you are ready! Give yourself grace...

I'm praying for your heart! You are a wonderful mommy! Always and forever!

Goodness his smile makes my heart melt!! We will NEVER forget Tripp. He has changed my life. Because of him I will love more and fear less. He has brought so many of us closer to God. He has done more for the world in his 2 Years and 8months than most of us do in our whole lives. You and Sweet Tripp have shown us the true meaning of love, strength, and faith. I know he is up in heaven "rock rocking" with God and he knows how many people love him. He is a hero!! I think of him probably 100 times a day. From the bottom of my heart THANK YOU. Thank you for sharing your amazing son with us. Thank you for showing us the way. We love you and we sure are going to miss him!

Courtney I have been checking everyday to see if u have written. We have missed u. Not a day has gone by that my family has not thought about Tripp. We miss him so much. In time u will be ok but for now just take time to grieve. We love u Courtney!!!!

I've never posted here before but I've been following Tripp's story for almost 2 yrs now. I want you to know how much you and Tripp have touched my life. I have said a prayer for you everyday this week for peace and to know how Jesus has a very special place for him in heaven. I teared up at every song this morning at church just thinking of Tripp, you and your family. You are the stongest person I know. Your story has impacted me personally as a person and as a mother. I believe that Tripp is with you every minute, watching over you and giving you the strength, love and support that you have given him. I have also said a small prayer to my daughters friends mother, Nettie Peterson Hankins, who was killed in a domestic dispute this past June. She was such a lively person who loved her children more than anything. She left behind 3 young children and I prayed and asked her to watch over little Tripp. I'm sure they could probably use each others company. Between Jesus and Nettie he will be well taken care of until you shall hold him again.

I am glad you posted this today; I thought of you all day today because I couldn't believe it's already been a whole week since Tripp left us. Last week I was waiting at the checkout line at our local dollar store and when I looked up at the balloon display what should be looking right back at me but two Elmo balloons. So I am confident that Tripp is watching over you and all of us right now! He was - and always be - a huge blessing in this world.

A few months ago I found your blog and I was really touched by Tripp' story, your courage as a mom, and especially your love and faith. Tripp story changed me as a person and as a mom. Thank you for sharing with us your story. I'm very sad for your loss. A very special angel is watching over you and your family. A big hug from Brazil.

Courtney, you have once again brought tears to my eyes, but in a good way. The Friday night before Tripp passed, I prayed to God to send my Daddy to you and Tripp because you both needed him more than me. My daddy passed 3 years ago and was as huge loss in my life. but that night, I felt he could help guide Tripp on his journey and also help you get through the day. Needless to say when I found out Tripp had passed, I felt like my daddy was with ya'll! May God bless and help you in the future you are an inspiration to all moms!!

Courtney, even through your grief, your words are so eloquent. You are a gifted writer, being able to explain something so painful so beautifully. (Perhaps a potential career later on??) But thank you for sharing Tripp's life with us. You both have inspired and changed me and my family more than you will ever know. Just as it is difficult for you to explain your grief, it is difficult for us all to truly explain our grattitude, love and support for your family. I pray God blesses the rest of your life with unending happiness. You deserve it for handling the awful situation you've been dealt so well. You and your strength are a true inspiration to all Moms everywhere. Thank you just doesn't seem like enough...

I don't think an Elmo song has ever or will ever make me cry like that one did. You are a very special person Courtney. I know the Lord is watching over you and blessing you with small tender mercies like a little butterfly song to remind you of dear Tripp and his new wings. You inspire me to be a better mother. To cherish every moment. I know you will see your Tripp again one day. And he will say thank you, for being the most amazing Mama he could have ever hoped for. I hope you know how many lives you and he touched. I am just one of many. All my love and peace sending to you.

Words cannot describe how sad I am for you that you lost your son. You were the best mother out there and your speech shows it. You were so brave to stand in front of everyone and read that long speech. I am sure you had tears in your eyes while reading it. I know you have touched others who have/had family members that have EB.

Courtney - thank you for sharing your beautiful son with us. He has made me determine to become a better person, for him. I cannot imagine what you are feeling, but please know that we are lifting you and him up in prayer continually.

Thank goodness this isn't written on paper, I cried many tears reading your most recent post. I can't imagine how difficult this week has been for you. I wish my family could have attended Tripp's services. We did see the coverage on the news, everything looked beautiful. My boys and myself wore red that day to honor Tripp.I think of your daily and continue to pray for you. I wanted to thank you for taking the time to write this blog. Tripp's story has changed my life in so many ways. It has made me yearn for a closer relationship with God and to not take one second of my children's life for granted. It has made me strive to be a better person and mother. To approach all situations with a positive attitude. To know that God is in control and that we have to trust in him. I know that Tripp's life had a divine purpose and I just wanted to let you know that Tripp touched my soul and I will forever be changed

Courtney ~ I am a stranger but I am weeping with and for you. I am the mother of a severely disabled child and I understand your concept of a "normal life". It is what you've been given with your child. My child is alive, but I've had to mourn the dream of what I wished for her. One of my favorite books on grief is "Tear Soup" by Pat Schwiebert and Chuck DeKlyen. Please find it. There is no right way to grieve or heal. My daughter is almost 15 and I still grieve. There is no accepting a loss like this, only accomodating. Peace to you. Your story is heartbreaking and inspiring.

Courtney, I've never met you, but my heart goes out to you and your family. Your words are so beautiful and touching. I wish I could have gone to the service, but living in Pennsylvania makes it a little hard. However, while I work, I had more than a moment of silence for him. I never knew Tripp, but I miss him terribly. He has changed my life forever, as have you. The Elmo song couldn't have been more perfect in timing or in meaning. It, as well as your speech, brought streams of tears running down my face. You are an amazing mother and I know you will see Tripp again as beautiful as ever and be able to give him the biggest hug for all of us. You and your family are always in my thoughts and prayers.

I think of Tripp all the time, and try to be a better person and mom because of him. My heart is broken for you, I am so sorry for the loss of your beautiful angel. Words feel so small. You will be in my prayers.

Wow. I am so sorry for your loss. Every time I read your blog I cry. You are such a great writer. You sound like you are a great mother and you took great care of your baby boy the best way you could. I have three boys Christian is 8, Caden is 3, and Noah is 16 months. I have definitely hugged them a little tighter and I started thanking god for three healthy boys more and more. Your little boy has definitely touched so many lives and he is in a better place singing with the angels and playing his drums! :) he does not have to suffer any more. I don't know what to say about grieving because I cant say I know how you feel but, I know how I would feel if I ever lose any of my children. God bless you and Tripp and your family. Take care.

I've prayed for you and Tripp, and cried for you and Tripp, and my life has forever been changed by you and Tripp.

The biggest change for me is that I'm not as jaded a parent. You have both given me perspective and a renewed energy to cherish every moment with my kids and to not take for granted the good health that they've been blessed with.

How can I throw my hands up in exasperation with my son for doing the things a typical teenager does? I HAVE a healthy teenaged son to be exasperated with! How can I snap back angrily to my daughter's hormonal outbursts because, oh my God, adolescence is just part of the growing-up process and what a blessing it is to have her here to love and to mold into a happy young adult!

No one should have to bury a child. No one should have to live the nightmare you're living. But what an honor -- to be chosen to be the earthly caregiver of God's angel, Tripp, His messenger of love and compassion! Through Tripp and through your example, strangers hold their children tighter, pray for people they've never met, have more understanding and respect for the pain and sacrifices of moms and caregivers, know about a terrible disease that needs a cure, and have fond memories that will live in our hearts of a special little drummer boy named Tripp.

I believe that with your gift with words, your motivation, and your willingness to share Tripp's life with others, you'll continue to raise public awareness for EB and eventually lead someone, somewhere, to find a CURE... in Tripp's name... and in God's.

Courtney, I am so sorry for you loss. Take comfort in knowing that little Tripp will be looking from above and holding your hand until the very day you meet again. It's a place I imagine for you that you will have an eternity of kisses and hand holding where neither of you ever know pain again.

Thinking of you, and praying for even an ounce of peace for you. My heart aches for you. Feeling any relief would be a blessing, that I would never have thought you would have felt yet, but I pray you will soon. I bet your boy comes to you often, lays beside you at night, sits with you on the rocking chair. You are an amazing mommy, and always will be.

Thank you so much for sharing this with us. You have been on my mind since I first heard about his passing. I have felt so much love for you and Tripp that I have started to become more vocal about EB myself, in Tripp's honor. I am doing everything I can to help spread awareness and help provide a cure for this tragic disease. I really wish I could have met your son as he is a HUGE inspiration to me. You and your son have actually brought me back to my religion and I believe now more than ever.....and for that alone I owe you and Tripp more than I could ever possibly give. I pray for you, your family, and Tripp several times daily. God Bless you Courtney.

You are so strong and I cant even begin to imagine the pain your heart must be feeling. You are in my thoughts and prayers. I pray for some healing, continued understanding and Gods grace on your life. Your little guy has touched so many!

Courtney, The song is so perfect for Tripp. Every Elmo sond will always remind me of him. You and your family are in my prayers every evening. It does take time for our hearts to heal, but the memories will always be there. Don't try to hide the hurt because the pain is what heals the heart. Tripp is going to be wirh us for a long time. He touched so many lives.Love & prayers from Taylors, South CarolinaCarla Spradlin

I can't imagine what your going through, but I can tell you that I think your a strong woman. I've tried to follow your sons story and prayed for you and him. I've cried daily since I heard he passed and I didn't even know him. Our hearts are with you and our prayers are with Tripp. I hug my children tighter each day and hope that I will be as strong as you should the unexpected happen. Tripp has touched many lives, as have you. Grieve for your loss, heal the heart I know is broken, remember the love he felt and gave, and know that many tears have been shed for you and your family. Rachel (New Orleans, Louisiana)

Courtney, Tripp's story is fairly new to me. I started following your blog about a week ago and it has really touched my heart. I've shared his story with so many people. What a precious angel you have!! And you, such an amazing, selfless woman you are! God couldn't have picked a better mother for such a perfect child in need of so much care & love. I've been praying for you and your family all week & I will continue to do so. Thank you for sharing yours & Tripp's lives with us. You have really made a difference & Tripp has changed my life forever!

I am just so so so so sorry and I wish I could take your pain away. As a BLM, there is no right or wrong way to grieve. You grieve whichever way you can. Its been almost 3 years since my Naomi has been gone. And it STILL stings I have some days where I cry and cry and cry . I remember going to the grocery store for something for my brother and I walked the whole store and I just could not find it when in a "normal" world I would be able to walk right up to it grab it and go. I was in a daze, i was in shock. I remember doing things 'normal" and I just was in a daze the whole time. That is the "new normal" i have found. Take each day a day at a time. Cry, scream, do whatever you meed to do sweet mama. This broke my heart. The elmo song is perfect, made me cry thinking about my little girl up in Heaven as well. I see you are not too far from me? I live in FL, south FL. You are a beautiful mother. Dont move your sons things, or move them, you do whatever you feel like . I kept Naomi's stuff for a while and then I just could not bear to have it anymore. I kept it hidden and then i donated it to her hospital and parents in the NICU. Some I wish I had kept and not given away. I have a pink painted butterfly cabinet my mom painted for me for a memorial for her in my room. I have her pictures in the NICU on there and HOPE things all over since her middle name is Hope. She sits in there as well in her little heart I choose for her. I have books I had bought for her while I was pregnant with her and a special stuffed animal. Something maybe you can do. I have peace with it now yet I stand there and cry sometimes. I am so so sorry and know I am thinking of you and your family and friends and Tripp. hugs . please feel free to contact me at NaomiSadie916@yahoo.com any time day or night.

Thanks so much for the update!!!! I continue praying for you and your family!!! You will never get over your little boy!!! God has sent him to you for a reason and he sent you him for a reason! Your update and video has made me cry! <3 The Dover family!!

courtney, thank you for sharing your thoughts during this extremely difficult time. i am praying from california! praying for strength for you everyday and for you to sense His presence and peace during the hard moments in the day.

God bless you, Courtney. I am again amazed by you, and in awe of you. You are so young and have been through so much and you carry yourself with such dignity and love, although I've never met you, I can see the love in your written words. I will be praying for you to feel the peace and happiness you so deserve.

I am crushed for you, a complete puddle. I was worried about you now that you have all this free time. I too wish that you could have your sweet boy just one more time; that sweet smile and his great little sense of humour. He loves you so much, and every butterfly, ladybug, rainbow, sunrise... they'll be all for you. You and your family are never far from my thoughts.

Dear Courtney...God bless you and your family, now and forever. It's been impossible for me to control my tears since discovering precious Tripp--your baby's sweet smile and his beautiful little soul will never, ever be forgotten. Peace be with you, Courtney.

Courtney, we have never met, but I have followed your blog. Tripp has touched my heart and I think of him everyday. I can't help but think of Tripp and your family and how much pain you are in. I pray that you and your family make it through this tough time. It can't be easy. You are truly blessed to have had such an angel. I'm so sorry for your loss. May God be with you and I shall keep you and Tripp in my heart and in my prayers. God bless you and your family.

I believe in God and miracles in my daily life and could give many examples I have experienced. After reading your post, I found two more 1.) that Tripp was in your arms at the moment he passed. It could have happened overnight, but it happened when he was in his dear Momma's arms. 2.) That you and your family discovered the Elmo Butterfly song that very day at that very moment.

I told him my husband that I wished we lived closer and could have offered love and support to your family during Tripp's services. I have thought of your family each day this week and today I offered a special intention at church for Tripp.

May you feel God's love tonight and be reminded of your sweetest moments with Tripp.

Tripp's life has really touched my heart, he was such an amazing lil boy & an inspiration to many including myself. God knew what he was doing when he made you his mommy you are so very special & Tripp was blessed to have you by his side every minute of his life. Thank you & Tripp for I am now aware of a disease that I never knew existed. Tripp has made it home & I'm certain he is so very happy!

i pray that with each passing day the heartache you are feeling will become a little more bearable. may god comfort you with the knowledge that you were the very best mother for sweet baby tripp! may god also comfort you with many wonderful memories of your brave little boy. my heart aches for you and your family...praying for tripp and all of you.

I would like you to know that your struggle has really helped my family get through this struggle. My 14 year old daughter has a very very mild case of EB. Your blog has been a major help especially for the people who thought I was crazy for popping the blisters when they came up. Thank you so much and know that you are in my thoughts constantly. I hope that you can find peace in your mind.

Courtney, I never had the pleasure of meeting you or your special little boy. I too lost my son when he was six weeks old. Nothing anyone says will make you feel better. But all we have is our faith in knowing they are in a much better place. Time will heal the wound but it won't fill the hole in your heart. And it shouldn't. My son passed away ten years ago and I still miss him like it was yesterday. Take any sign you get because they will help you through this very hard time. It does get easier. You will see. I will be praying for you and your family.

I can't believe how perfect Elmo's butterfly song is for you and your family. And somehow, I think it WAS written for you and Tripp. The writer may not have known it at the time, but there was definitely an extra hand it that! Thinking of you every day!

Courtney, You are so beautiful inside and out. The life you opened up and shared for the world to see is such a blessing. Five days ago I had never heard of EB and over this past week I have poured over your blog posts from the beginning. Tripp was such a beautiful, beautiful boy and such a strong fighter and you ARE such a strong fighter and the strength of your son, yourself and your family amazes me. I will be praying for God's peace to wash over you from the top of your head to the tips of your toes. You are going to change this world for those with EB and the families affected by it (you already have!).....YOU are still living Tripp's purpose in life and are able to continue his amazing legacy. Tripp is totally dancing around in Heaven boo boo free and smiling his cute smile and (I'm sure) flexing his muscles for Jesus!!! Everyone has to just LOVE him up there. I'll be praying for you!! God Bless You!

What a beautiful speech. I have tears streaming down my face. What a wonderful tribute to Tripp. He was such a fighter, and is an amazing boy. I agree that his angel wings must be SO big! :)

You are an amazing mother and I admire your strength so much. You have been in my thoughts all week, and I am hoping for peace and healing for you. Please keep ups updated, and let us readers know if there is anything we can do to help.

Pslams 23, Pslams 34:18I pray you find comfort, peace, and strength in the lord. He holds not only a special place in his heart for your son but for you also. Both of you have been an inspiration to many. I hope the scriptures help you in some way. Forever in my thoughts and prayers <3

Hello Courtney, I just wanted to let you know what a impact Tripp has made on my life and I have known of him for less than a week. I "stumbled" upon your blog when someone on Facebook posted a link to your blog and announced that Tripp had recieved his wings. From the moment I read the first blog I started to cry and pray and talk to God. I have spent this whole week reading your blog from the beginning and feeling like I know you and Tripp and your wonderful family. I am so honored that I am able to know about you and so happy that you share with all of us about Tripp's life. You are right. He is a Hero and was sent here to change lives. He has changed mine. Praise God for little Tripp. I am sorry that he suffered while he was here. It hurts my heart to know that and it hurts my heart to know the pain that you and your family are going through now but it is nice to think about Tripp sitting on Jesus's lap and talking to him about the good he did in his short time here. I just wanted you to know that I admire you so. Bless you Courtney and Bless Tripp. RIP Tripp. Tell Jesus I said Hi. I hope to meet you one day Buddy.

I know not any of my words,will comfort you. As a mum, I can hardly imagine what you're going through. you're such an inspiration for all of us, mums around the world. Little Tripp changed my life, for sure. And for him and you, I'm grateful.Sending all my love to you and your wonderful family, dear Courtney.Praying for little Prince Tripp. much much love, xxxxxx

Miss, I don't know you but a family member posted this on my FB page. As a fellow parent, I can't imagine your loss, but I am highly impressed by your words during this dark time in your life. I am so sorry for the loss of your son, but I thank you for being a source of inspiration. You are in our thoughts and prayers.

Saying special prayers for you during this difficult time. Your little man is so special and touched/changed/inspired many lives. I love you all and hope you are given some peace and comfort and feel God's tender support, for now and always. You are such a wonderful mommy and I can only hope to be half the mom you are.

I have thought of you, and prayed for you, often this past week, Courtney. You are an amazing woman! Thank you for sharing Tripp with us, and thank you for teaching me what being a mother truly means. May God hold you in His arms and give you comfort and peace.

Courtney, I'm so sorry for your loss. You are a strong woman and you and Tripp inspired us all. We will never forget your beautiful little drummer boy. He will always be in our hearts. Much love and warm thoughts <3

You are the strongest mommy I know. Your beautiful little man was so lucky to have you care for and protect him and now he will be with you and watch over you until you can physically be together again. I am so so so sorry that you both have had to go through so much together. You honestly have helped me feel so grateful for the blessings I have and to be a better momma. I am praying for peace as you adjust to having your angel in heaven. That Elmo song was definitely a sign! He's flying high..pain free & no more diaper changes!! :) xoxox

We don't know you but we are sending so much love to you and your family. Courtney, just take one day at a time. Lean on your loved ones, and let them lift you up. It's okay to grieve for your little man who was your life. Your speech was so beautiful. Thank you for sharing with us. You are special and loved. Hang in there sweetie.

Courtney I don't think that I will ever forget the photo of Tripp, truly an amazing image that says so much about such a beautiful boy. I have never met you and do not pretend to understand what you must be feeling. I just feel compelled to say something to comfort you and to let you know that Tripp and yourself touched others beyond what you may know. I was moved by the notes that so many left for you. I was moved by the depth of their feelings and their love. Some for a child they had never met, and for a Mother they will never know. I hope that you can find comfort in the fact that Tripp opened up so many hearts that were longing to love, to speak, to care, and to share. I will always think of Tripp everytime that i see a butterfly. Now he has his Angel Wings. Peace.

Courtney, you were given a rare and wonderful gift in precious Tripp. The pain you now feel shows that you were the perfect one to recieve that little blessing from God. With great love, comes great pain. But God promises to turn our mourning into joy. The hole in your heart will never be filled on this earth, but God will cover that hole with his comfort and grace and fill it with precious memories of the love you shared with Tripp. Your are so courageous to share your rawest emotions with us. God had a plan for Tripp's life and He has one for you as you continue on without your little drummer boy. I pray that the Holy Spirit gives you peace with each new day, with each breath that you take. May the Blessed Mother comfort you and your family...she knows the sorrow you are suffering. I love little Tripp and in his honor I will continue to spread EB awareness as much as I can. I will smile at others a little more and complain a little less. Thank you for the chance to know him through your heartfelt words. Blessings to you in the days to come.

My heart mourns for you and your loss! I cannot tell you how many times I have spontaneously burst into tears this past week for you and your pain and sorrow. You make me want to be a better mother. You make me realize how important it is to cherish my children. Your love for your son has touched my life in such a huge way I don't even have the words to explain it. Your faith has inspired me to trust Him more, honor Him more, and rely on Him more. Thank you for sharing the most painful event of your life with us. Tripp's story has impacted so many people. And thank you for being such a great example of a person walking in obedience to the Lord. You are a light, Courtney. A bright shining light that brings hope to this world. Thank you.

My family continues to pray for you, Courtney, as well as for your little angel, Tripp. I know he is so proud of you, and he continues to smile down on you! The Elmo video was so nice. I'm sure it was a sign from your butterfly that he loves his angel wings. May God continue to bless you and give you strength during this time.

I'm always in tears while reading your blog. Tripp could not of had a better mother, and I'm so glad you have a great support system. Thank you for sharing your story and letting Tripp touch thousands of lives.

Still constantly thinking of the you and little man Tripp throughout the day. Know that his life will be remembered and HONORED by all of us supporters, who have and will continue to spread awareness of EB and raise money until we find a cure. I have never in my life been so moved and inspired to join a cause until the day I discovered you and Tripp through your beautiful blog. You can count me and my family in as a lifetime members of Team Tripp.

Bless you Courtney. I can only imagine the pain you must be feeling for your little angel. I don't think I could have got through the past week - you're amazing, a true angel that walks amongst us. Cxxx

I've thought about you a lot this week and have been praying for you and your family. I've been praying for Tripp to know that he touched so many people's hearts. I pray that you find your ground again and that the pain gets easier though I know it will be very hard. Just know that prayers are coming your way.God Bless you Courtney

Such a beautifully written post and a great speech for Tripp's memorial service. Tripp's smile does melt my heart and lights up a room! I have never felt the pain you are feeling but in a time where I dealt with a loss, it was the nights that were the hardest for me. I could lead a somewhat "normal" life during the day where I could stay busy and keep my mind occupied. But at night when there was nothing to do my mind would wander and my thoughts would stray. These nights I would pray myself to sleep, wake up and pray myself to sleep again. It is at night when you are in my thoughts and prayers the most because that was the hardest time for me.You are amazing, Courtney. Each day is an accomplishment and is one day closer to being reunited with Tripp. I hope you are able to get away soon. I heard from a friend who's 18 month old daughter drowned say that the hardest thing was getting away after the funeral but was the best thing for her as she began her healing.I can't tell you how much I hurt for you. I feel such pain and know that your pain is 1000 times greater than that which I feel. I can't wait to follow you on this new journey and learn so much more from you. Tripp has taught me so much and I am trying to make positive changes to myself and my relationships with my children because of him. I know Jesus is proud of his hard work!

As bring you all the love that has awakened me from afar Tripp? as a wrap to not miss anything and get pure, clean and hard to mitigate some of the pain you feel deep in your heart? It is impossible (it is) but I must try. My name is llyne and I live in Seville (Spain), although recently found your blogg, every word written there has sent me so much love that they keep out tears from my eyes I must say I found it a little late, and Tripp had taken its beautiful wings but does not stop think of every day. We talk a lot about Clara Tripp, that has wings and looks down from heaven. Clara is a beautiful little girl of 3 years and have happily care of cancer in his little head. But Tripp is very brave and fight every day against the dragon in name. A few days back to the horrible castle (the hospital) but we return forces and return home where he feels most comfortable. you can not imagine the times I've started these letters (with the help of google translator because unfortunately no English, but did not want that to be an obstacle for you to receive my words), I deleted and rewritten as they say in these cases. I just want you to know that I love Tripp as if he had known, I thought watching the videos he shared that space with.Thanks for sharing your story that is ours, thank you for bringing an angel into our hearts, thank you for showing such courage and strength and extreme situations, thanks for teaching which is the EB. thank you very much for everything ...... very many kisses and hugs for your family, and one especially for you. Feel quiet today because we already have an angel watching us from heaven. llynePS: Here I leave the link of a blog from a friend who writes about my Clara and the dragon ugly name.

"I have never met you"... but you and Tripp have inspired me ever since I first read your blog. Tripp's life has been an amazing one, to hold so much value not only to yourself, but everyone who has ever even heard of him... what an amazing boy!

I think about you each and every day... Multiple times. I wish I could hug you. I'm so sorry. I know that feeling of wanting to care for him all day every day.. Just to have him back. Im so sorry. Please take care of yourself.

Dearest Courtney, I think of you every day and I pray for you. My tears fall for you. Your pain is my pain and loss you feel makes my heart cry.

Every night I go out in our garden and watch the stars. I know that Tripp's up there and that he was peering down at us with his happy face and giggles. Happy and free. A lifetime here is just a minute for him. So in his world you will soon meet again.

Cry all the tears you need to cry, seek comfort and closeness from the people around you and allow it to take time to find a way to live without him here in person.

But never forget - he is still with you even if you can not touch him.

He is the sun that warms your skin. He is the soft breeze that caresses your cheek. He is the tenderness in every hug you receive.

Cortney, you continue to amaze me! This is absolutely beautiful. Elmo and the butterfly means a lot to me. Butterflies are so beautiful and whenever I see one, I believe it is a spirit. Two days after my husband passed, I had to call AAA to change a flat tire on his car. While the man was changing the tire, I sat on the front porch. There was a beautiful red butterfly that landed about 2 feet from me and sat there the whole time the tire was being changed. I have looked on the internet and have not seen a butterfly like it. I really believe it was my husband watching out for me. We live in in Michigan and there are no butterflies, normally, at the end of October. Tripp is with you all of the time and you are right, he did an extremely great job on earth, what a precious little boy! I know God is very impressed at what a very wonderful mom you are.

Hi my name beccy and my when my son thomas was born i was told he had the same condition as tripp, for two weeks. But it turned out to be bullous icthysois. I have been reading your story for the last few months and everytime i do it breaks my heart, i think that you are amazing mum and tripp was very lucky to have you and you him you can see how much you love one another. My thoughts are with you are this terrible time. I think that the song with the butterfiles was put there by him for you to see love and hug s xxx

Courtney, my heart aches for you. I know there are no words to express that can take away your pain. But I do know that your little angel is looking down watching over his mommy & hugging you every step of the way. What an amazing boy you had that showed a lot of people what true strength & love is. I deft believe the Elmo Butterfly song was meant for you to find & a sign from you precious boy. I pull up Elmo for Breighton everyday on You Tube & today the Butterfly song came on. Like that butterfly, Tripp is his flying around in heaven so peacefully. Brittnie, Kyle, & Breighton Hamel

Thank you for having the courage to share your story with the world. As a mom my heart aches so much for you now and I will continue to pray as I have been for quite a while now. I too lost a child to a syndrome, back in 2005. It is the hardest thing that I have ever been through. It does get easier but your wounds are fresh and you have been on a treadmill for so so long now. As this treadmill stops suddenly, it is near impossible to regain balance. However, know that with as many prayers that are being said everyday for Little Angel Tripp and your family, you will go strong through this life with holding him in your heart forever. God Bless you, God Bless you!

Dear Courtney, I want to send you big hug and I really wish you could hold Tripp in your arms one more time. Every single day I have Tripp and you in my thoughts, thank you for sharing Tripp´s story. I miss that beautiful Angel!Love

Your suffering is so poignant and your faith is so strong. I admire you and I hope to be half the woman you are.Grief is brutal, as it is our human response to the loss of a loved one. Your love for Tripp is powerful and the care you provided was extraordinary, so your grieving will be a long process.I will pray for your peace as you find your new normal.

You have an amazing ability with words. The fact that you are so intelligent and so emotionally intelligent, your strong faith and your strong family and network of friends will get you through these tough times.

Tripp really has impacted the lives of so many people. We are all lucky to have "met" him (the quotes since so many of us have just read about him) and you.

What a wonderful video to have discovered. Elmo and butterflies, who could ask for more?

Still thinking of you so much, Courtney. My son's belongings and even medicine all remained in the same places after he passed for a good long time. I don't think putting it away will help you grieve; I think it's part of grieving. If that makes sense. It never felt right to put those things away, but at a point it felt like it was "time." I had a blanket that he was wrapped in when he passed, and it was never washed once until last week. A year and one week after he died. I couldn't do it before then. All of the sudden, it felt like it was ok. I hope I'm making sense. I thought I'd put all his stuff away in one quick motion, but I didn't. Bit by bit over the months things were moved. The only thing left is his name on his nursery wall. You do it in your own time. Anyway, I'm thinking of you and sending you thoughts of peace and comfort. I wish I could do so much more.

I am amazed that you were able to stand up and give that speech. What incredible strength you have! How lucky Tripp was to have you as his mommy. I am praying that God surrounds you with his love and continues to send you little signs (like the video) that bring you comfort.

Courtney, I can not imagine the pain and loss you are feeling now, and will continue to always feel. Tripp has touched so many people's lives, and he will never be forgotten. By sharing his story, your story, you have helped make me a better mom and a better person. What an incredible legacy! If we could all be so inspiring in our lives... My heart aches for your loss, and I will continue to keep you, Tripp, and your family in my prayers.

Continued love and prayers for you Courtney!!! You are an amazing woman and inspiration to so many people out there. Your testimony and faith have touched so many people and given people the faith that they have lacked. Even though we have never met, I feel like we are friends already!!!

I wish I had something eloquent to say...something, anything that would ease your pain. My heart aches for you, sweet Courtney; you will forever have a place in my heart.I thank you for sharing your sweet little boy with us all because he has forever changed me. Shed those tears that you have held back for so long... please know that thousands of people are continually lifting you up in prayer.

I've been alive for 36 years, and had many experiences, and many trials and heartbreaks throughout that time. I've known of you less than two months, and you're easily one of the strongest women I've ever heard of. Your grief will change, ebb and flow, and take many different forms along its journey. And it will be a long journey of much sadness, but also much gladness. As your heartbreak lessens, you'll cherish all the memories you have, and your heart will smile.

I wish you peace, comfort, and the patience you need to let yourself get through this. And I'm glad to know you'll continue to champion EB, for the other kids still out there, and the ones to come.

As a mom I can't imagine the pain that u are feeling at this time. When our child was born he almost passed away and I had to face that fact head on. I will pray for u and those who loved Tripp as if he were their own. I think in some way through your writings we all became parents of Tripp and his loss is heart-wrenching. As I look at my little boy I thank god for him every second of the day. Bless you for sharing ur story.

What a sweet song! Perfect for Tripp! It is hard for the friends that didn't know you because we find ourselves looking for those updates wishing he was back in your arms and someone calling with a cure. One day someone will find one. Thank God we do have hope after this world. Tripp will never hurt or be blind again. God bless you. Healing takes time and you can't rush it. Take one day at a time and one day you will be with your precious son again. God bless you and your family.

I lost my son last year and it was by far the worst pain I have ever gone through, it feels like a bad dream, that you cant wake up from. It physically hurts. In my case I never got the change to tell him hello or I love you, or look into his beautiful eyes. He had passed away in my belly when I was 32 weeks, from a horseshoe kidney, I just knew something was wrong one morning when I didn't feel him move for a few hours, he was always very playful in my belly, especially after I ate breakfast. I remember when they told me he had passed away, I was all alone with the lady doing my ultrasound, and she was very quite, I started to panic, because they couldn't find my son's heartbeat, i was so scared to ask her, is he ok? Then I finally got the courage to ask her, (by then I knew he had passed, but I didnt want to believe it) and she looked down, and said no. My heart sunk down and I felt like I had just died, I couldnt breath, I just sat their, then it hit me. This year has been so hard for me and my husband, (My husband, is in the United States Marine Corp) He wasnt able to be their when I found out my son, Christopher, had passed. I do believe the hardest thing is to sit through labor and go through all the pain, physically, and mentally, until your body feels like it just want to give up. I just know that you will make it through this very tough time, and yes everything will seem bittersweet, because your heart is missing a very Big part, but just keep praying, and stay close to God, because you will get to see your baby boy again. He is safe with Jesus. I hope my son gets to meet Tripp, and they can be angel buddy's in heaven. Just know that he is not alone, their are babies in heaven that are with him. What I love to do is when Im feeling down and really missing my son, is, I go out to his grave and talk to him, tell him how much I love him, and just tell him how im feeling. I go out on every holiday just to be with him, I get comfort just sitting by his grave, when I go out their I can just feel that he is with me, I just get this feeling in my heart, that he is their. It is the best feeling ever. My husband is stationed in Florida right now, but we are from Louisiana. Every time we get a chance to go home, the first place we go is to Christophers grave. I just wanted to tell you that, their is hope after loosing a child, you will feel happy again, but it does take time, some people take longer than others, some days you will cry all day, and others you will feel peace because your child is happy and healthy with Jesus. Never stop praying, I have gotten so much closer to God, and I am so grateful that my son gets to meet him, and not have to suffer. I have my faith that I will see my baby boy again, that is what keeps me going. I will keep you in my prayers, Its nice to talk to other families, and mothers who have angel babies, If you ever want to talk Ill be here for you. My email is "hayley_deville@yahoo.com" or you can find me on facebook "Hayley Deville Hall"